Giving Voice to Real Experiences

Wide local excision – lumpectomy to you and me

I’m going into the nearest hospital for a wide local excision – which I think is the same as a lumpectomy, but I don’t really know. All I know is I’m not having a mastectomy, which I’m hugely grateful for. Nonetheless its surgery, and I am in a bit of a state about it.

Diary – December 17th. Woke early, feeling very anxious. Drove to the hospital at the appointed time, after phoning to check they had a bed for me. (what if they hadn’t? the anxiety would have been intolerable). Sat in the ward waiting room for hours, waiting for the bed to be ready. Eventually got checked in – my bed’s by the window looking out on to a garden which is good. There are holly bushes with berries on and blackbirds to look at.

Terry offers to go and get me a TV / phone card for the system above the bed; I said no but he persuades me I might need it. [Later I’m really glad he did this, when I’m awake all night and too groggy to even know where my book is, let alone feel like reading it.]

That day involves a lot of waiting and being checked out by doctor, anaesthetist and various admission procedures. I’ve not been able to eat or drink so I’m not in the best of moods. Feels like I’ve been asked to come in many hours before going to the operating theatre.

Terry’s furious too. He’s found out he won’t be able to stay with me whilst I’m recovering:

“I thought that Jane (the breast care nurse) said it was a dedicated breast cancer ward. She said I’d be able to stay, to come down to theatre with you, to wait on the ward for you till you came back”

“She told me that I’d meet other women with breast cancer here, but I’m clearly not going to. None of the others in the room are here for breast surgery”

“How can she get it so wrong? She’s supposed to be our main support person. She’s supposed to know how things work. This has been a general gynae ward for months now, the ward nurse told me it stopped being a breast cancer ward in May”

“So how long can you stay with me?”

“I have to come during visiting hours and then I’ll have to go. Pretty different being allowed here for two hours in the evening than being allowed to stay all the time.”

“Shit. Thank god for the telly.”

As it turned out he was able to stay with me until I went for surgery. He came down to the pre-op room and waited there with me till I went in.

A surgeon came in to talk to me. I’ve not met him before. I insist that he draws marks on the breast, fantasies of the wrong breast being operated on, fears of waking up without one. You do know it’s just a lumpectomy don’t you?

Timidly I ask: “Where’s Claire? (the young surgeon who gave me the diagnosis) She said she’d be here” “It could be anyone from the team who operates on you”

Why didn’t they say that then?

I thought Claire was going to be here.

I wanted her to be here

Holding my hand again.

Before I know it I’m coming round from the op; fuddled images, mouth full of cotton wool, I’ve got an itchy nose, think I hear a nurse saying that’s the morphine, can it be true that morphine gives you an itchy nose? Am I hallucinating? I dream of lumps of bloody flesh on the floor, blood everywhere. Trying to wake up, wanting to sleep deeply. Then I’m awake and my friend James is sitting by the bed. I try to be normal but fail, giggle and cry at the same time, tell him about my dream, laughing, wonder how he knew to come when Terry wasn’t there, realise after he’s gone that the pillow is covered in blood, where that’s come from I don’t know, my face and head haven’t been cut open? Why hasn’t someone noticed? I want my mum to get me a clean pillow-case. [Years later, Terry and I talk about where he was and neither of us can remember why he wasn’t there when I woke up. My best guess is he was told to leave until visiting time and went to the hospital café. If so, why did the nurses let someone else in to visit me at my most vulnerable time?]

That night, after visiting time, the small ward feels gloomy. Each of the four beds have individual lights on, each of the women in their own states of difficulty. No nurses to be seen. In the next bed a woman with learning difficulties has her telly on a children’s programme. It’s very loud. Across the way from me an old woman is crying, she doesn’t know where she is or how she’s got here, how will her son know where she is. I call a nurse and ask if anyone is looking after her. Food arrives and it’s horrible. The fourth woman in the ward is either unconscious or asleep the whole time I’m there, with blood draining into a bottle under her bed. Tubes going in and coming out. I’m glad I’ve not had anything so serious done. I’ll be able to go home tomorrow and eat normal food. Terry comes during visiting hours to kiss me goodnight. He gets the pillow-case sorted out.

Late on, in the middle of the night, a nurse appears beside my bed and tells me her name is Angela. She says she’ll be looking after me tonight. In my morphine-induced condition I feel enormous love for her – the first person to say that her job is to look after me, and the only one to tell me her name. I never see her again.

In the middle of the night I can’t work out how to use the bedpan they bring me, somehow I miss and wet the bed. I can’t sit up and my pissing mechanism isn’t working properly. Later I want to go to the proper toilet, I’m sure I could make it, if a nurse came with me. They’re all too busy. When I ask they make “tsk, tsk” noises under their breath and say with a resentful sigh that they’ll bring me a commode. They close the curtains and I have to use the thing feeling far too close to the woman next to me who’s only a curtain away. I feel hot and embarrassed, I can hear her breathing and the sound of her TV, tinny through the headphones. I’m still groggy, desperate for a wee but still struggling to make it happen.

The next day is a Saturday, and though I was told one of the surgeons from the breast cancer team would come and check me over, give me permission to go home, of course none of them are there on the weekend and I have to wait hours for the duty surgeon to come. By the time he arrives I’m ready to discharge myself. He gives the wound a cursory look and says I can go. One of the nurses (who I’ve never met before, don’t know her name) gives me a handout about what exercises I need to do and says I can go home:

“Is that it? What about the dressings? When can I take them off? Shouldn’t I be seeing a physiotherapist? Who do I call if I need anything? What if the pain gets worse?”

“Would you like a referral to the district nurse to call”

(well yes, I don’t know how to deal with the dressings)

“What if it starts to hurt?” “Will I need some follow up or physiotherapy?”

“Paracetomol is enough for the pain, we have no physiotherapists, you can ring us if you have any problems”